Wondrously Wounded: Theology, Disability, and the Body of Christ

By Brian R. Brock

The church welcomes all—or it should.

The church has long proven itself a safe refuge despite the sad reality that it can be, and has been, unwelcoming toward those perceived as different. This is especially true of the contemporary church’s response to those with disabilities—a response often at surprising variance with its historic practices of care. The church once helped shape western morality to cherish these individuals with love and acceptance. It is thus ironic when today’s church neglects this care, or practices care with no awareness of the rich theological history out of which such moral sensibilities originally emerged. In  Wondrously Wounded, Brian Brock reclaims the church’s historic theology of disability and extends it to demonstrate that people with disabilities, like all created in God’s image, are servants of God’s redemptive work.

Brock divides his volume into five parts. Part one chronicles how early Christianity valued and cared for those with disabilities, putting into practice Jesus’ teachings about divine mercy in decidedly countercultural ways. Part two details how a rise in the fear of disability tempted the church away from these merciful practices as well as its confession of the infinite worth of all God has created. Part three traces how the fear of difference continues to negatively shape contemporary practices in today’s schools, churches, and politics. Part four lays the foundations of a vision of Christian life that is resistant to this pervasive fear. Finally, Part five shows how the recognition of all people as part of the body of Christ not only demonstrates the love of Christ but displaces the fear of disability in a manner that invites the church beyond even the most ambitious contemporary hopes for full inclusion.

Brock interweaves his historical and theological analysis with the narrative of his own disabled son, Adam. These stories vividly bring into view the vulnerability, as well as the power, of the disabled in contemporary society. Ultimately, Brock argues, those with disabilities are conduits of spiritual gifts that the church desperately needs.  Wondrously Wounded is an appeal to the church to find itself broken and remade by the presence of Christ on offer in the lives of those society has labeled "disabled."

• Language: English
• Publisher: Baylor University Press
• Release date: Aug 1, 2019
• ISBN: 9781481310147

Book preview

Wondrously Wounded

Series Editors

Sarah J. Melcher

Xavier University, Cincinnati, Ohio

and

Amos Yong

Fuller Theological Seminary, Pasadena, California

Wondrously Wounded

Theology, Disability, and the Body of Christ

Brian Brock

Baylor University Press

© 2019 by Baylor University Press

Waco, Texas 76798

All Rights Reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission in writing of Baylor University Press.

Unless otherwise stated, Scripture quotations are from the New Revised Standard Version Bible, copyright 1989, Division of Christian Education of the National Council of the Churches of Christ in the United States of America. Used by permission. All rights reserved.

Cover Design by Savanah N. Landerholm

Cover image: Kendall Cox, In a Green Light, acrylic on canvas, 2018

Book Design by Diane Smith

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For Stephanie

This is my movie. This is my life. Be cool.

For I am poor and needy,

and my heart is wounded within me.

Series Introduction

Studies in Religion, Theology, and Disability brings newly established and emerging scholars together to explore issues at the intersection of religion, theology, and disability. The series editors encourage theoretical engagement with secular disability studies while supporting the reexamination of established religious doctrine and practice. The series fosters research that takes account of the voices of people with disabilities and the voices of their family and friends.

The volumes in the series address issues and concerns of the global religious studies/theological studies academy. Authors come from a variety of religious traditions with diverse perspectives to reflect on the intersection of the study of religion/theology and the human experience of disability. This series is intentional about seeking out and publishing books that engage with disability in dialogue with Jewish, Christian, Buddhist, or other religious and philosophical perspectives.

Themes explored include religious life, ethics, doctrine, proclamation, liturgical practices, physical space, spirituality, or the interpretation of sacred texts through the lens of disability. Authors in the series are aware of conversation in the field of disability studies and bring that discussion to bear methodologically and theoretically in their analyses at the intersection of religion and disability.

Studies in Religion, Theology, and Disability reflects the following developments in the field: First, the emergence of disability studies as an interdisciplinary endeavor that has impacted theological studies, broadly defined. More and more scholars are deploying disability perspectives in their work, and this applies also to those working in the theological academy. Second, there is a growing need for critical reflection on disability in world religions. While books from a Christian standpoint have dominated the discussion at the interface of religion and disability so far, Jewish, Muslim, Buddhist, and Hindu scholars, among those from other religious traditions, have begun to resource their own religious traditions to rethink disability in the twenty-first century. Third, passage of the Americans with Disabilities Act in the U.S.A. has raised the consciousness of the general public about the importance of critical reflection on disability in religious communities. General and intelligent lay readers are looking for scholarly discussions of religion and disability as these bring together and address two of the most important existential aspects of human lives. Fourth, the work of activists in the disability rights movement has mandated fresh critical reflection by religious practitioners and theologians. Persons with disabilities remain the most disaffected group from religious organizations. Fifth, government representatives in several countries have prioritized the greater social inclusion of persons with disabilities. Disability policy often proceeds based on core cultural and worldview assumptions that are religiously informed. Work at the interface of religion and disability thus could have much broader purchase—that is, in social, economic, political, and legal domains.

Under the general topic of thoughtful reflection on the religious understanding of disability, Studies in Religion, Theology, and Disability includes shorter, crisply argued volumes that articulate a bold vision within a field; longer scholarly monographs, more fully developed and meticulously documented, with the same goal of engaging wider conversations; textbooks that provide a state of the discussion at this intersection and chart constructive ways forward; and select edited volumes that achieve one or more of the preceding goals.

Contents

Preface

Acknowledgments

Introduction: Disability as a Matter of the Heart

Part I. Disability in the Christian Tradition

1. Wonders from Jesus to Augustine

2. Wonders from Christendom to Modernity

Part II. Welcome and Screening—Doxology and Anti-Doxology

3. Practicing Welcome in the New World of Genetic Testing

4. Prenatal Testing as Anti-Doxology

Part III. Systems, Norms, and Modern Medicine—Attending to Creatures

5. Two Critiques of Orthodox Medical Ethics

6. Quality of Life in an Industrialized Age

Part IV. The Everydayness of Mercy and Wonder

7. Health in a Fallen World

8. Autism and Christian Hope

Part V. Body-Life as the Communicative Life of the Worshiping Community

9. The Peculiar Togetherness of the Body of Christ

10. A Remarkable Stroke in a Strange and Remarkable War

Notes

Bibliography

Scripture Index

Ancient Sources and Church Fathers Index

Author Index

Subject Index

Preface

Now I only inquire when I find myself inquired of. Inquired of, that is, by people, rather than by scholars. There is a human being in each scholar, who inquires and stands in need of answers. I am anxious to answer the scholar qua human being, but not the representative of a certain discipline, that insatiable, ever inquisitive phantom which like a vampire drains the one whom it possesses of humanity. I hate that phantom as I do all phantoms. Its questions are meaningless to me. On the other hand, the questions asked by human beings have become increasingly important to me.¹

Most people would consider my son Adam profoundly intellectually disabled. One of Adam’s many gifts to me is to make the terms profound and disabled feel painfully misleading. Far from pointing toward an entity with crisply defined boundaries, the term disability points into a complex terrain populated by remarkably diverse conditions and crisscrossed by highly charged political disputes. Adam’s life is tangled in that jungle. Should Adam emerge in these pages as a person, citizen, and churchman in his own right I will have succeeded in one of my main goals: to offer readers a sense of the ways common distinctions like able and disabled, high functioning and the profoundly disabled can obscure the lives that are so much more than the labels.

Living with Adam has meant doing theology under the pressure of those who ask. People ask about Adam—serious and probing questions that admit of no easy answers. Even to attempt to answer them demands revisiting widespread assumptions about God and the world in which we both must live: industrialized, consumerist, secular Western democracies.² The process has surfaced substantial questions about some of the sterile boundaries imposed in much academic theology. As an academic theologian trained in medical ethics, I was being given a good shakedown by Adam, unsettling the very foundations of my understanding of what it means to do theology. He even forced me to the realization that much that goes under the heading of disability theology still takes too many common assumptions for granted, is still insufficiently shaped by the realities to which Christians commit themselves when they confess themselves to be followers of Jesus Christ.

A central presumption of this book is that our lives with God, neighbor, and world cannot be understood independently of one another. Though what we call disability is never a purely individual experience, it is one that can only be lived out by individuals.³ The term disability points to a deep phenomenon, a rupture not just in conceptual categories but in people’s lives, much more than a phenomenon unfortunately afflicting some people. The term disability is first and foremost a sign hanging over a doorway that opens into existentially dangerous territory, an unexpected portal into an apparently alternative reality. Nobody goes through that door willingly. And nobody who goes through it is unchanged.

This book is held together by a life lived under the label disability, that of Adam Brock. Adam’s body and mental world are vastly different from anything I have personally lived. To know Adam at all demands letting him tell me what his life is, and aligning myself with what he reveals. Devoid of any power of projection, he nevertheless articulates profound things with wide-ranging implications. His quiet voice has called me through the door of disability and emboldened me to embrace the suffering of finding the right words to let you hear it too. My hope is to give you a sense of the wondrous beauty of Adam’s form of life. It has been a privilege to have a front-row seat on the work of a healer in a church founded as a hospital for fallen humanity.⁴

The chapters in this book broadly track the various stages of Adam’s life. As my reflections on his life unfolded over many years, the book was bound to end up the story of a conversion—mine. Conversion stories are notoriously hard to tell, as the slow transformation of the author’s view of the world must be tangibly depicted. The various fractures and shifts of viewpoint in this book are unified by an underlying story about how living with Adam has overturned my narrative of my own life, my fears and hopes, as well as my views of God and the church. Through it all I am constantly puzzling through what it could possibly mean to call him disabled.⁵

If Adam is going to appear before you in his own right, there are limits to what I can and should tell about him. Only one of us has the power to define both our lives by telling our story, and this imbalance comes with real dangers. The first is to tell his story as a way of proving my credentials to speak on this topic, a gesture that has become so familiar in disability theology circles.⁶ Telling stories always engages an audience and builds powerful ethical momentum. Stories can easily overwhelm theoretical discussions and draw undue attention to the storyteller. It is for me a matter of the ethics of discourse to forgo the deployment of stories to convey my credentials as a credible authority on this topic. I will therefore strictly limit myself to only telling stories that advance the reader’s understanding of the sort of actions in the world that I am trying to describe in more theoretical terms. Every story is an interpretation. I will tell stories as occasions to display the theological hermeneutics of experience that I understand to be my main contribution to the scholarly discussion of disability. The stories I present are the ones necessary to understand the theoretical discussions that most often precede them. In this book, narratives and arguments are interpreting each other. Telling stories in this way may validate my credentials to speak, but this is an effect, not the aim, of my telling them.

My aim will be to write his life as we have lived it: together. To tell his story at all risks obscuring important aspects of lives like his, as narrative conventions enforce their own rules of coherence and closure. It would be easy for these narrative conventions to sanitize his story by masking what is unsettling and different about him—his pain, shame, and frustration. Ultimately none of us will know whether my stories about Adam map onto his perception of our shared experiences. I am not certain, for instance, that Adam’s experience of the world has a narrative structure with a past, future, and present. He may inhabit the world in something like a perpetual present tense not easily fit into conventional narrative forms. Such difficulties of talking well about Adam’s life must not be obscured or evaded if his own personality is to emerge. Honoring his uniqueness thus demands dramatizing the difficulties of narrating his life, making them more palpable. One of the most important gains of not using stories to establish my credentials as an author is that I am empowered to depict my bewilderment, my lack of understanding of given situations, and so to let his certainties emerge as genuinely other than mine. To be true to Adam’s life on his own terms demands working to push myself as the storyteller into the background, a task in palpable tension with relating the story of the conversion he has catalyzed in me. Such tensions must not, and indeed ultimately cannot, be evaded.⁷

If I can tell our story in ways that rob Adam of his own (nonverbal) voice, the problem recurs in relation to the many other people who are part of his story. Disability happens in the gloriously repetitive stuff of the day-to-day, and the day-to-day of Adam’s life is highly social, woven together with the lives of his family, his school, and his local and national governments as well as his church. I hope to offer some glimpses of what this dailiness entails in all its joys and difficulties. Yet to articulate my own difficulties in living day to day with someone who is genuinely different from me implicates other people and social orders, exposing the frictions between them. My wife, Stephanie, has her own views of many of the events that will be narrated in this book, as do our other children, Caleb and Agnes. Their stories would be subtly but importantly different from the ones I will tell.⁸ Though it will be my voice you will hear in these pages, it is one I hope has been shaped by these other voices and the ways they tell our story, as well as by voices of the saints through the ages, from whom I have learned the story of all our lives together with God.

Approaching a theological treatment of disability as a reflection on my life with Adam has the advantage of concretizing my discussion and limiting its scope. It will also foreground the questions raised by cognitive disability, as well as the particular set of theological questions raised by congenital conditions.⁹ Loving Adam in all his concreteness is thus a good place to start to talk about disability but can also foreshorten the discussion. Both conditions exacerbate the problems of representation just outlined. Concentrating analysis on a young man with intellectual challenges may also buffer the political challenge of his life, since it is easy for parents to infantilize people like Adam by assuming they will never grow up and out of their households. I will need to find ways to keep my relation to him as his father from sequestering him in the private zone of the family. His parents are not the only ones responsible to Adam. As threatening as it feels to relinquish him to others, this is a constant responsibility of a parent. It includes letting his vulnerability be visible to readers who need to be challenged by his predicament as a citizen of a developed democratic society, and as a church member.¹⁰

Why tell all these stories without a shred of evidence that Adam cares whether his story is told or not? I tell Adam’s story as a witness to his witness. It is a confession, a testimony. I seek to listen to and join in with his song of praise. To put the matter this way is to be released from the worry that I am illegitimately using or operationalizing Adam to score theological points or gain territory in a culture war. Much like the early Christian parents who did not shirk martyrdom because it would deprive their children of parents, our hope is only that Adam will not be disadvantaged by our amplification of what we have heard from him about the church and society in which we live.¹¹

By daring publicly to amplify the quiet joy of Adam’s witness I hope to explode some of the layers of uncomfortable avoidance and outright censorship that surround disability in churches, in public discussion of social care policy, and in medical contexts. In each of these contexts most people assume they know what disability is. In fact their views are often skewed by unacknowledged fears of disability as a dark thundercloud threatening to destroy lives and eject people into a desolate life of social isolation, grinding practical difficulties, and unbearable expense. It is difficult for any of us to eradicate the fear evoked by the term disability, which threatens at the very least an unbearable diminishment of the life choices available to us. This fear points to an enslavement to the desire to control others, to make them into our images, and to make ourselves into an image of perfection. It is an enslavement that renders our lives, and our societies, frightfully two dimensional—efficient, homogenous, and so unsurprising.¹²

One way of summarizing the Christian gospel is as an empowerment to risk living as the vulnerable beings we in fact are, to make peace with our limits and blemishes and to delight in the unexpected. Human redemption consists in the recovery of the joy and freedom that come with being content to be creatures rather than aspiring to be gods. The central theological task of this book is to give theological density as well as contemporary tangibility to this claim. In short, I hope to convey as richly as I am capable that what Christians should hear in the term disability is the rumble of something approaching that is much bigger than our fears and dreams, and forces from us an enlarged capacity to love, wonder, and praise.

None of this is meant to suggest that pain and suffering are not part of the human experiences typically labeled disabilities. The title Wondrously Wounded highlights the entanglement of blessing and suffering at the heart of the story of God’s people. Jacob is on the run from his brother Esau, whose birthright blessing he has deceitfully stolen from their old and blind father Isaac (Gen 27). Jacob’s nomadic life on the run is upended by a rude attack of an unknown man in the middle of the night at the ford of Jabbok (Gen 32:22-32). In the course of that extended wrestling match Jacob realizes he is wrestling with God and demands a blessing. Dawn arrives to find Jacob exhausted but exultant, the desired blessing secured. With the blessing has come the gift of a new name commemorating for all generations such wrestling as the very essence of faith.¹³ An unwelcome attack has been transformed into the discovery of Jacob’s true place in God’s story. But the process has not been easy, the wrestling so violent that Jacob is left with a permanent bodily impairment and a very visible limp. The unexpected attack, the bravery of clinging to God instead of running, the pain, the permanent wound, the social marker of a funny walk—come together in a transformation of Jacob so deep that he now sees literally everything differently: himself, his feud with his brother, God, and his place in the created realm. In time the whole people of God come to identify themselves with this wrestling.¹⁴

Human eyes can see the wrestling with society, with the medical establishment, and with the church that disability so often provokes. But wrestling with the human experiences labeled disability is ultimately to wrestle with God. These are experiences that bring human beings face-to-face with creaturely limits and personal brokenness. In them reality tears through the paper-thin beliefs about human life that are characteristic of modernity, shattering the individual hopes built on them. Precisely in the shattering of superficial hopes does disability become a crucible for the radical remaking of hope. With this remaking comes new awareness of the blessings and responsibilities that are ours alone. Letting my own wrestling at times appear will hint at how, for Christians, this wrestling is understood as the interruption of a Christ who graciously attacks the constricting expectations that blind us to others.¹⁵

The subtitle, Theology, Disability, and the Body of Christ, alludes to my ambition in this book to offer a theological reconstitution of the very idea of disability. The body of Christ is the result of God’s gracious attack on the antihuman certainties that keep each fallen human generation estranged from one another. Throughout this book I will regularly use the language of people who carry the label disabled to highlight the contemporary relevance of this divine attack on contemporary assumptions about disability. It is the experience of one’s self as able in comparison to others that is fundamentally problematic for the Christian. It tends to entrap both those who believe themselves able and those they believe are not within patterns of relating that blind them to what the Spirit of Jesus Christ has for the church and the world in and through each human life.

To name disability as the site of struggle with God is to insist on the primacy of theological description. For me, writing is an extended attempt to discover the words from the biblical traditions that illuminate my life with Adam. I say attempt because far more than any before, this book has been constructed in fits and starts, in first stabs at stories and analyses, some of which were initially published elsewhere.¹⁶ Passages from those first attempts appear here interspersed with much new material and in what I hope is a more developed, clear, and readable form. Re-presenting some of this earlier material often lends older descriptions quite different colors, yet another reminder that the struggle is not an abstract one, but an ongoing quest to find the words for the life I live with the living person of Adam Brock. A kaleidoscopic treatment results, in which each chapter picks out one facet of this lived life. Eventually a set of central theological themes was to emerge—the revelatory role of the human experiences currently labeled disabilities, the importance of the body, with its embedding in social and linguistic structures, as well as the counterintuitive nature of health and wholeness when viewed within the fullness of redeemed community. These points of clarity were achieved by means of a classic theological approach; using biblical texts, and traditional readings of them, to find my way into the coherence of my own story. This required holding rather loosely to the usual academic divisions of theology from the Bible, the Bible from historical analysis, historical analysis from appeals to experience, and experience from cultural criticism. Points needed to be found where typically very discrete discourses—literary, philosophical, political, and theological—meet and even fuse to open unexpected ways of perceiving and living in our world. The central problem is to accurately formulate what might be reasonably hoped for all of us in the middle of the world we already inhabit. It all must be in play in order to speak with any thought about the redeeming work of Jesus Christ, and the life of the community of faith in the contemporary world.

Disability is so much more than a medically diagnosed impairment, a social stigma, or political activism engaged in the fight against manifest injustice: it is an existential struggle. Foregrounding this personal struggle is theologically important because most people do not find disability disturbing in this deeper and more personal way. Most assume disability is a sad departure from what human beings were meant by God to be that befalls an unfortunate few. Ironically, the most severely intellectually disabled also do not struggle with disability, being wondrously free from pondering what others suppose them to lack. I write then for those who have for some reason found themselves forced genuinely to wrestle with disability. With any luck what we will together discover are truths hidden by the illusions of the great majority. That majority continues, mistakenly, to labor under the greatest illusion of all—that disability is a marginal note to the human condition.

Acknowledgments

Writing is revision, making generous and critical readers indispensable. Amos Yong pushed me to produce this book, Martin Wendte to keep the stories in, and Carey C. Newman to trim the fat. Students in the 2017 Theological Ethics and Practical Theology Research Seminar in Aberdeen pointed out the tricks I’d missed, and I’m especially grateful for the engagement of my colleagues John Swinton, Grant Macaskill, and Leon van Ommen. I benefited from a trial run of some of the material at the Summer Institute on Theology and Disability at Azusa Pacific University in 2017, where I received especially insightful feedback from Brian Lugioyo, Helen Ree, and Paul Shrier. In the last leg of revisions, the hospitality of the monks of Pluscardin Abbey was a lifesaver (yet again!), as was the feedback I received from those who read near-final drafts: Amos Yong, Sarah Melcher, John Swinton, Tom Greggs, Susan Parsons, Jake Rollison, Julie Lamb, Kevin O’Farrell, Tony Stiff, Alex Mason, Steve Hickey, and Topher Endress, to whom I am doubly grateful for preparing the index.

Introduction

Disability as a Matter of the Heart

Practitioners of disability theology and the churches of the developed West are at a crossroad. Virtually every public building, including churches, has been modified for accessibility, and the importance of making the lives of people with some disabilities a little bit more livable is now widely fixed in the public consciousness. Yes, most will admit, there is more to be done—perhaps much more—but at least the peoples of the developed West can be proud of having accomplished the task of including people with disabilities in the collective life. Down this self-congratulatory road we can already see public attention turning to supposedly more pressing social issues. And that is the rub. Accessibility modifications have made everyone’s lives easier without demanding more substantive change.¹ They may even have stalled progress in increasing the hospitality of secular society by generating the illusion that interpersonal change is less important than infrastructural improvement.²

Facing the possibility that the accessibility movement has hardened problematic views of disability is to confront the central problematic of a theological account of disability: the resistance of the human heart to being claimed and reshaped by genuine difference. As the wellspring of affective personal attachment, the human heart is the origin of a person’s basic orientation in the world as well as the place where people genuinely meet one another, the locus of interpersonal union. A deeper resistance to having one’s sense of what counts as a normal human life can fester in human hearts. To admit that this resistance is widespread is to be forced to consider that Western society may not have achieved as much for people labeled disabled as it would be comforting to assume. With this admission another, harder, road becomes visible, that winds down into the badlands of the human heart, where inner resistance to finding joy in the disabled other persists.³

The main aim of this book is to beckon readers down this harder road. It will not be all darkness. When the genuine breadth of human life lodges in human hearts, it profoundly reshaped the way people look on the world. Conversely, all the ramps and lifts in the world are a poor substitute for open hearts, as hearts hardened to otherness radiate rejection and resistance even in physically accessible public places. This contrast will need to arise before the reader in vivid detail. As the painter’s task is to bring to canvas the beauty and ugliness she sees in the material world, this book must display the ugliness our self-image as members of the enlightened and humane modern world so desperately wishes to hide. Facing the ugly rejection and marginalization still suffered by people with disabilities is only tolerable in the light of a gospel with the power to reveal its alternative: the community of open human hearts.⁴

Human hearts take shape in specifically configured cultural contexts. The term disability is always a label that attempts to capture several types of liminal conditions within ever shifting webs of human relations. Gaining any substantive purchase on disability will therefore demand historical and genealogical work. In an up-to-date definition of disability that would be difficult to improve, Rosemarie Garland-Thomson captures the vast semantic range of contemporary deployments of the label disability.

Disability is in an overarching and in some ways artificial category that encompasses congenital and acquired physical differences, mental illness and retardation, chronic and acute illnesses, fatal and progressive diseases, temporary and permanent injuries, and a wide range of bodily characteristics considered disfiguring, such as scars, birthmarks, unusual proportions, or obesity. Even though the prototypical disabled person posited in cultural representations never leaves a wheelchair, is totally blind or profoundly deaf, most of the approximately forty million Americans with disabilities have a much more ambiguous relationship to the label . . . . Disability, then, can be painful, comfortable, familiar, alienating, bonding, isolating, disturbing, endearing, challenging, infuriating, or ordinary. Embedded in the complexity of actual human relations, it is always more than the disabled figure can signify.⁵

The highly complex and contradictory meanings inherent in contemporary usage of the term disability offer little more than a starting point for a theological treatment of the various life experiences to which that label points.

Complexifying the Word I: Self-Knowledge Between God and Neighbor

Writing stories and novels was Franz Kafka’s way of seeking an abundant life. As a Jew living in the Austro-Hungarian empire, a functionary in a large insurance agency reaching ever greater heights of bureaucratic complexity, an unmarried first son of an overbearing and socially aspirant father seeking family advantage through his marriage, and then a man of soldiering age kept home from the gruesome trenches of the First World War, he needed to find a way to articulate the tensions and dilemmas of his existence to avoid being psychologically dismembered by the forces at work in and upon him. As he constructed fictional characters who were themselves sufferers and resisters of inhumane forces, Kafka patiently searched for coherences within his own life narrative. These fictional characters would somehow, by way of hints and gestures, uncover more promising ways of living to an author who was himself also a sufferer and resister. His writing was his wrestling, and his resistance.⁶

In writing novels and stories Kafka was attempting to gain purchase on his I without falling into one of the fundamental paradoxes of modern identity: the habit of thinking of ourselves as discrete beings whose identities are essentially self-determined. Kafka knew that if he was to have an I at all, it would have to be laboriously wrested from the illegitimate moral demands assumed by most people in his time and place.

The fourth-century African Christian Augustine of Hippo also wrote his life, offering his own life to the reading public instead of a fictional doppelganger, as did Kafka. Neither could say exactly where their own faults ended and the cruelties of the societies in which they lived began. Augustine’s main concern was to praise God for having rescued him out of this confusing predicament, offering his own life as testimony that Jesus Christ is still at work even today. What is so memorable about the stance Augustine strikes in the Confessions is that he never makes claims about God that are not set within prayerful speech to God. His search for the narrative coherence of his life is part of a deeper and wider conversation with God.

Confessing himself a Christian has committed Augustine to an account of himself as a character who has been set on a path toward the discovery of his true I—one constituted within a set of relationships that precede him, with God, creation and the neighbor. If Augustine’s life has any unity, he confesses, it has been given to him from beyond himself. It will take active work to receive it, the claim of Jesus Christ having radically decentered his former self-identifications.⁷

The task before him is to come to terms with what Scripture and the Christian community say about who he is. He starts over at the beginning, the beginning of his own story in the works of the God who has created him and claimed him for life with the people of God. He discovers that there are three stories that encapsulate his origin, and so his true identity. The first is the story of having been captured, against his will, for the plans and programs of the Lord of history. Confession commits him to witnessing having seen the action of Jesus Christ afoot in world affairs. But this story of the origin of his own faith is not intelligible without locating the points where his particular story interweaves with the story of the origin of creation and of the church within it. His story of conversion, of the origin of the world, and of the saving work that births the redeemed community are all necessary parts of knowing his identity in its enfoldment within the greater story of God’s ways with the world.

No one has full possession of their own story, because everyone is ultimately called into existence by the story of Jesus and incorporated into this story by the Holy Spirit. The vulnerability intrinsic to reliance on the Spirit reveals vulnerability as ultimately not a threat, but the condition of relation, and indeed, its very promise. Augustine’s own point of greatest vulnerability was his relations to two people, his pre-Christian mistress and their son he named Adeodatus (gift of God).⁸ To tell the story of his vulnerable relationship with God meant telling of the vulnerability he experienced in his relations with other human beings.

Theological writers like Augustine levy a crucial challenge to contemporary theologians: to refuse to let discussions of theological concepts drift free of a more basic confession of relational intimacy with a living God, what Martin Luther was later to call the for me aspect of the Christian confession.⁹ What is being claimed when a Christian doctrine is invoked gains substantial traction when readers can see how the author believes such a doctrine orients people in the world in which they live.

The examples of Augustine and Kafka highlight why it is impossible for me to imagine talking in any serious way about disability and health, Christ the healer, Christian theology, or myself without reference to Adam. Whoever I am is also and irrevocably Adam’s father. His characteristic round face and vaguely Asiatic eyes makes him instantly recognizable as a bearer of the medical label Down syndrome. Fewer will recognize his lack of speech and characteristic arm flapping gestures as signs of his autism. Adam is now a teenager, a fact that I cannot but contemplate with genuine wonder. This book is an apparatus for discerning how to live with integrity with him and the God from whom he has come in the modern, developed West.¹⁰

Writing Disability as Coming to Terms with Creaturely Vulnerability

My soul was wounded, and my life as it were torn to pieces, since my life and hers had become a single thing.¹¹ So Augustine described the death of his faithful Christian mother, Monica. Human beings are constituted by their ties with others, ties so tight that when they are severed our I can go missing. The terms I and you are in the end only names for aspects of a relation composed neither by I nor you. Human beings must constantly puzzle through and laboriously differentiate where I begins and you ends. Let’s face it. We’re undone by each other. And if we are not, we’re missing something.¹²

The language of disability is almost inextricably bound up with distinctions between us and them—with the ones doing the talking assuming themselves to be the us and the people being talked about the them. I have chosen to explore my life with Adam in the public forum of an academic monograph because it allows me constantly to unsettle these deep-seated linguistic habits.¹³ Human beings estranged from their Creator have not found suitable words to express all that needs to be said about those currently called disabled. To escape becoming entangled in this us-them thinking, I want to begin differently: from the wonder at the heart of the creaturely life human beings live. I write as a prayer for God to transform misshapen fears and repulsions into joy and delight.

I also write to digest events and gazes that have left an unsettled and finely textured sediment in my soul. I write in response first to averted gazes, confused and repulsed gazes, mocking and annoyed gazes, and more powerfully by gazes and gestures of joy and delight. Behind every word of this book is a wall of gazes; not gazes on its author, but toward the one he gazes at in love—a gaze itself provoked and consoled by the gaze of the One who created us both as we are. I have been made part of that community sensitized by gestures of disdain and dismissal that fundamentally challenge the politics of Christian love.

Perhaps more powerfully than anything else, the gaze and the gesture produce the feeling of threat in modern societies within which those bearing the label disabled must live their lives. As a man of fighting age kept home from the front by his role as a war-indispensable insurance company employee, Kafka felt intensely the barrage of disapproving gazes trained on him by the citizens of Prague as he walked the streets of his home town. The war directly impacted all he thought and felt, but at an emotional level. He experienced himself a victim of constant personal attacks prosecuted through sneers and glares. Before the rise of the surveillance society he described how the weight of a gaze lingers long after the act of gazing has passed, how approval and disapproval burrow into the soul of those looked upon.¹⁴

It is notoriously difficult to read gazes, a problem further complicated by the ambiguity and essentially contested nature of disability ascriptions.¹⁵ It may then be one absurdity too far for someone whose body and mind locate him right at the center of the Western ideal form of humanity to claim any real experience of disability—a healthy white male, articulate and in the prime of life, and a card-carrying member of the aggressively competitive and hypercognitive world of the academy to boot. Yet Adam has come to live in me. Were Adam to die, he would live on in me, since I can forget neither his face nor the faces the world has turned toward him—nor that through him God has confronted me.¹⁶ This has rendered the person I point to as I sensitive to the slights, glares, and curiosity of the general public. The realization that something has changed comes in moments of noticing oneself internally bracing to weather the field of gazes that crisscross public space or assuming a defensive crouch at curious stares. Along with such winces comes wondrous surprise at discovering a sense of kinship or affection passing in a glance with someone in a wheelchair, or with an autistic teen and her harried loved one. Having been disabled in this manner means, above all, becoming acutely aware that some human beings are never invisible in a crowd.

Just as people with bodily impairments can experience being abled by intimate and supportive relations with others, so too can loving someone lead to a vicarious internalization of their (largely social) disablement.¹⁷ To say that Adam has disabled me is to confess having been drawn into his world, with its time and its politics. Modern political philosophy struggles to account for the passion and grief and rage that draw people out of themselves and binds them to others, overspilling the vocabulary and ontology available to secular liberal rights holders.¹⁸ Christians, in contrast, have a ready vocabulary for this process of being made members of one another.

It is finally from Adam then, not Kafka, that I learned the power of gesture and gaze. The process has been accelerated because Adam withholds his speech. To know him at all has demanded expanding my grasp of the richly communicative rhythms of his various forms of bodily communication. The power of disability to expand communicative bandwidth is prodigious. Laying paralyzed and unable to communicate as a sufferer of locked-in syndrome, Martin Pistorius gained special insight into the ubiquity of communicative signaling.

People revealed themselves . . . in a touch that was gentle and caring or rough and unthinking; in feet that shuffled with fatigue when they walked into a room. If someone was impatient, they would sigh as they washed or fed me; if they were angry, they would pull off my clothes just a little more roughly than usual. Happiness fizzed off of them like a small electric pulse, while anxiety had a thousand telltale signs from the nails people bit to the hair they pushed behind their ears again and again to try to contain their worry.¹⁹

In the end, everyone wears their heart on their sleeve. Becoming attuned to finer-grained modes of communication allows glimpses of a more subtle and gentle politics tuned in to the happiness that fizzles off people’s bodies like a small electric pulse and can respond with gentle empathy to pains too deep for words. At the same time, it is also to be sensitized to the blundering, blind violence of our age and the cloak of words behind which it hides.

To say Adam has disabled me is ultimately to draw attention to the hard work that goes into mediating between him with his limits and capacities as he negotiates a world in which it is assumed that he lacks the basic capacities of normal citizens. The suffering that goes with this hard work for Stephanie and me, as his parents, relates to the diminishment of our ability to live the lives we have been led to expect people with our levels of education and privilege deserve. Thankfully, this is a diminishment that Adam himself does not suffer. It is equally true to say that Adam has empowered me—as is the slave in Hegel’s master-slave dialectic—by liberating me from the illusion of all masters: that they live without the help and support of others. Adam makes the need for networks of supportive human relationships for a flourishing human life palpable. My use of the utterance Adam has disabled me thus represents a ruthless exploitation of the ambiguity of the term disability, so that the theological reality hidden within aspects of the secular term disability can be exposed.

Kafka offers a final provocation. The tuberculosis that eventually killed him did not proceed quickly. The metamorphosis of his body was decisively altering all his relationships and rendering him a foreigner to his own society. As the horizon of death loomed ever larger in his body, he sensed himself slipping into a rival time, one very different from that inhabited by the citizens of the general public. In such a situation, he mused, what else can happen but that the two worlds split apart, or at least tear away at each other in a fearful manner.²⁰ He penned his greatest works as he slipped ever deeper into what has come to be called crip time. The rending of time by a disabling condition proved the crucial catalyst for crystallizing his deepest insights into the everyday challenges facing nonstandard human lives in modernity.

One of the founding documents of contemporary disability theology was born out of a not dissimilar experience of a broken body, written—that of Nancy Eiesland. Her writing, too, was a living engagement with the everyday reality of Christian faith in a modern world not often fully welcoming of people with disabilities. In the tearing away of the time of her disablement from the public time of modernity, she was able to see more clearly the most problematic political, material, and anthropological implications of much modern Christian theology.²¹ Adam’s existence, his experience of illness, as well as his very active engagement with his church and the general public has likewise alienated me from the common sense of our age, making this book, too, part of the tradition of suffering writers like Eiesland and Kafka, and others, such as Flannery O’Connor and Franz Rosenzweig.²²

Eiesland was finally a political insurrectionist. Insurrection, being an assault on the great inertia of modern common sense, demands great discipline, at once intellectual, linguistic, and practical. Passion is insurrection’s fuel.²³ First comes seeing the systematic ways in which the status quo disadvantages and slights some, the least able to defend themselves, while making life as easy as possible for others, the most able. I have been disabled because Adam rubs my face in the barbarisms of our civilized world. Not so long ago people like Adam were routinely hidden away, not offered education or a place in their own family—and today the vast majority of people like him are killed before being allowed to assume their rights as citizens of modern Western democracies. I dream of exposing and demolishing the configurations of words and ideas that make that barbarism seem reasonable. Yet raw outrage is sterile or simply destructive if not focused to yield constructive proposals about how Christians might go on with any integrity in a society that condemns some people to die because they cannot speak, or because their lives are considered too divergent from common pictures of the good life.

This book will at many points burn with angry protest at certain gazes and gestures, as well as the unexpected joy and comfort that beams from faces suffused with love. The anger cannot and must not be an end in itself. If—and here the conditional is emphatic—the anger at the way our world is arranged that burns through some of what follows is theologically defensible, it can only be as lament and protest at the habitual disdain of God’s good gifts. That really is worth protesting.

The Shape of Things to Come

Focusing on the architecture of the gaze and gesture provides an initial access point into the dynamics that shape the lives of those labeled disabled in the various scenes of modern life. In this book I will develop and deploy a doxological hermeneutic to indicate how these cultural scenes and domains might be negotiated in a faithfully Christian manner. The language of doxology and anti-doxology emphasize the inescapability of the activity of praise for human beings as emotive and communicative beings. What and how we praise has wide-ranging epistemic implications. Within a doxological hermeneutic, to speak about the phenomenon that is normally called disability is to understand it as a creaturely phenomenon strung between creation and the final judgment. At the center of this history is Jesus Christ, who, as creation’s Origin and Redeemer, is the active opponent of all sinful and so destructive human gazes.²⁴

The book is organized into five sections. Interested readers can grasp the general thrust of the book by reading the codas to the five sections, especially the coda to part 4, which summarizes the first half of the book and points to the aims of the second. Part 1 positions modern presumptions about disability against the horizon of patristic Christianity. A theological approach to disability is introduced by way of an extended investigation of the hermeneutics of anomalous births. Very early on, Christians began to develop countercultural attitudes to the socially marginalized, especially abandoned children. Where citizens of the ancient world saw an anomalous birth as a threatening sign, Christians saw a much more positive divine creative work (chapter 1). The modern period sees the ancient division of anomalous births into either curses or wonders joined by a third option, the anomalous birth as a biological accident. The severing of human birth from the realm of divine action has not only affected how moderns see their own children, but how they understand their own acts of compassion. Chapter 2 draws attention to the ways in which Jesus’ very physical attunement to the presence and need of others in all their contingent particularity both taught and modeled the importance of understanding human acts of compassion as fundamentally resting on divine mercy. Theologically speaking, human mercy and works of compassion are best understood as responses to divine mercy. A genuinely theological account of the various phenomena grouped under the label disability depends on reconnecting these conditions to God’s working in the world.

Part 2 puts this discussion of the hermeneutics of anomalous births alongside contemporary prenatal screening practices. Chapter 3 offers Adam’s origin story to reveal some of complex tensions and implications that have come with the new world of diagnostic genetic testing. The moral, technical, and social mechanisms characteristic of the modern medical establishment are exposed as assuming some people to be expendable. The claim that prenatal testing is not a judgment on disabled lives becomes difficult to sustain in light of such testing practices. Chapter 4 goes deeper into the conflicts and tensions appearing in the story told in chapter 3. A doxological cultural hermeneutic is developed as an analytical tool for spotting the false hopes and fears that drive violence against people labeled disabled. Language rooted in fear can be distinguished from that which arises from praise, and both take flesh in socially elaborated routines. Drawing on social scientific studies of prenatal testing, it reveals how the fear of negative outcomes has come to play an architectonic role in organizing modern screening practices. This fear can be theologically narrated as a form of misdirected praise, a living, articulate, and institutionalized embodiment of fear that is the opposite of the praise of a good Creator.

Part 3 investigates how the fear-praise polarity shapes contemporary practice in schools, churches, and the political realm. The remarkable silence of mainstream medical ethicists on issues of disability is the focus of chapter 5, which outlines the role of the discipline of medical ethics in establishing and sustaining the current status quo. Furthermore, and just as troublingly, it also shows how the work of academic practitioners of medical ethics has, in effect, politically disempowered medical professionals. A recent damning report on the healthcare outcomes for people with learning difficulties in England is the focus of chapter 6, and raises questions about why people with disabilities, especially intellectual disabilities, seem not to receive the same health care that most people in society are afforded. Paradoxically, the creaturely concreteness and particularity of people labeled disabled have become increasingly difficult to accommodate in modern healthcare systems. On closer examination it appears that many of the problems people with disabilities experience in modern healthcare contexts are not different in kind to those they can expect to face in other sectors of modern Western societies. To have a unique mind or body, and especially to be unable to speak, renders one a painfully bad fit in all these domains. A communication gap has opened that is best understood as an artifact of creation being fallen, of human beings having been rendered insensate and unresponsive by sin. Sin causes